North of Scotland
Managed Clinical Network for Eating Disorders
Patient & Carer Consultation Day Report
7th June 2008
Linda Keenan
Manager
Managed Clinical Network for Eating Disorders – North Scotland
Eating Disorders Patient and Carer Consultation Day
7th June 2008
Introduction
In January 2008 the Managed Clinical Network for Eating Disorders – North Scotland applied to the Scottish Health Council for a small grant to do a number of things with the main one being to host a Patient and Carer Consultation Day.
The aims of the day were to:-
· Show them the proposed space set aside for the unit
· Ask them what they thought the unit should look like
· Ask them what they feel would help aid their recovery
· What types of therapy have they found useful
· What they felt would not be helpful
Have an open discussion on the Outpatient journey of care.
In March 2008 we were informed that our application had been successful and planning began.
To publicise the event drew up a flyer and sent this to everyone we could think of including GP surgeries across the North of Scotland, voluntary organisations, other eating disorder services in North Scotland. We also issued a press release and did radio interviews to publicise the event. The response was good and there were several interested parties, some of whom were unable to attend the event but were willing to submit written feedback and complete any questionnaires that we could send them
We used 2 questionnaires plus an evaluation questionnaire (please see Appendix 3 4 and 5). These were sent out for completion before the event and attendees had access to them on the day. We also sent out an information sheet (Appendix 2) to give people a little bit of the history and decision making underpinning the unit.
On the Day
There were 17 people attended on the day, with a mixture of patients/ex-patients and carers.
The day consisted of 3 workshops concentrating on the following
Workshop 1 – Therapies
Workshop 2 – Facilities for the new unit
Workshop 3 – The outpatient journey
Workshop 1 – Therapies
The participants split into 2 groups, one of which consisted of patients/ex-patients and the other consisted of carers.
Information of what individual therapy and group therapy actually entailed was explained to the carers group.
Carers Group FeedbackThe main points which came out of this discussion were as follows
Group Therapies
Ø The group felt that although individual therapy was important, group therapy was equally important.
Ø Body Image Sessions – although carers felt these may be difficult there was a strong feeling that they were absolutely necessary
Ø It was felt that group therapies were good for people as they kept them interacting with each other – socialisation element to it.
Ø A key point was that the relationship with a therapists and continuity of care with that therapist was of paramount importance.
Ø It was felt that patients had to be “ready” for therapy in order to engage with it
Complimentary Therapies
Ø It was felt that therapies such as massage, facials etc all had an important part to play.
Nutrition Sessions
Ø Dietitian should have an awareness of the abnormal way of thinking of patients.
Ø Some family therapy with the extended family e.g. sharing a family meal
General
Ø It was felt that the General Public did not know enough about the illness
Ø GP’s required more education regarding the illness
What do carers/families need?
Ø Carers felt it was vitally important for carers to have as much information as possible. They felt that this was extremely important at the beginning of a patient’s illness
Ø To speak with other people in the same situation
Ø Coffee/chats with other parents
Ø ?Group run by carers to take place in the unit
Ø ?telephone helpline
Ø Carers can often feel pushed to one side – not really knowing what is happening within treatments
Ø During “pass outs” there should be an involvement process i.e. carers want to know what to expect/what to do (the worst case scenario would mean they could be more prepared, being given practical examples would be good)
Ø Support for siblings as well as parents
Ø Preparation for discharge
Ø Continuity of treatment post-discharge
Patient Group Feedback - Therapies
The main points which came out of this discussion were as follows
Group Therapies
Ø Patient perspectives
Ø Shared experiences
Ø Peer support
Ø Halfway house – day patients
Ø Recovered patients – attending groups strengthens recovery
Ø CBT, self awareness
There were discussions surrounding:-
Ø What an eating disorder gives a patient
Ø Why is it so hard to give up?
Ø Empowering people to take control
Ø Motivational enhancement
Ø Neuro Linguistic programme
Ø Body awareness, relaxation
Body Awareness Sessions/Occupational Therapy
Ø Built confidence
Ø brought normality into the rehabilitation process
Ø Helped with career paths
Ø Focussed in on functionality strengths V weaknesses
Ø Spending money – shopping skills
Ø Arts & Crafts – were very important
Ø Showed you how to occupy your time
Ø Taught day to day life skills
Ø Helped with social skills
Ø Weekends were important
Ø Informal events
Ø Film club
It was felt that the above therapies should be challenging otherwise it was too easy to get bored. That the unit should not be “too cosy and pleasant” or else people would have no impetus to “get better”.
Alternative Therapies – people would like to have available
Ø REIKI
Ø Crystal healing – voluntary
Ø Art Therapy – voluntary
Ø Creative writing
Ø Psychotherapy
Ø Psychodrama
Ø Animal Therapy – therapets (bed bound), Equine therapy (being mindful of allergies)
EMOR
Ø ? Different people for different therapies
Ø Would there be a choice of key-worker – suggestion that maybe this should not be a patient’s one to one therapist
Ø Boundaries should be set i.e. do not allow patients to talk about weight, abuse, self-harm, specific eating disorder behaviours
Ø Encouraging each other was important
Ø An anonymous “drop box” for suggestions, comments etc
Ø Community Group – uncomfortable but useful
Ø Mandatory motivational work goals for the week (done in small groups)
General comments
There should be links with general medical services and that perhaps severely ill patients should progress from medical to psychiatric services. Targets should be small targets – achievable but not too big so as to cause anxiety.
It was generally felt that a wide range of therapy was preferable to one ethos but that there should be a thread of mandatory therapies e.g. CBT, self-awareness, anxiety management but some groups should be a choice.
General Discussion also took place surrounding the following
Ø Long term v short term admissions
Ø Day patient status was felt to be very important with lots of preparation required for the transition from inpatient to outpatient.
Ø Family therapy (a lot of discussion on this topic with splits in opinion)
Ø Therapy for the family
Ø ?possibility of a group for partners and flatmates as well as carers
Ø Should the doors to the unit be locked ? - it was generally felt that they should be locked for patients safety i.e. not allowing other patients within the hospital to enter the unit and to stop patients from absconding.
Although the morning session was aimed to concentrate on therapies a lot of discussion overlapped into other topics which were to be covered more fully in the afternoon.
Attached at Appendix 1 are the results of the therapies questionnaires which were completed by both patients/ex-patients and carers who attended on the day.
Workshop 2
Facilities for the new UnitThis session was aimed at covering the more general demeanour/ambience of the unit which is felt to be extremely conducive and beneficial to the treatment of patients. Plans for the layout of the unit were available over the lunch period for people to look at and make comment . A general questionnaire was completed by those attending and which suggested topics/subject areas for discussion as follows:-
1. What activities would you like to see available in the unit e.g. board games, computer games, arts and crafts, yoga etc?
2. What do you think would make the unit a nicer place to stay in/visit e.g. fresh flowers, pictures on walls etc?
3. If Internet access was available for patients what would you use it for?
4. Do you think it would be a good idea to have access to your own mobile phone – please give reasons for your answer?
5. Visiting – if we had access to videoconferencing facilities i.e. face to face visiting via computerised equipment do you think you/your relatives would use it? Please give reasons for your answer.
6. Do you think “community meetings” would be a good idea – please give reasons for your answer?
7. If there was access to outside visits what would you like to do – e.g. equine therapy, clothes shopping sessions, supervised swimming etc?
8. If you are taking in personal possessions from home – what would you bring – e.g. iPods, laptops, personal photographs etc
9. How important do you think it is to have some “free time” on the unit i.e. not taking part in therapy sessions or activities? Please give an indication of how much time per day you would feel reasonable?
10. Do you think therapy sessions/activity sessions should be available at the weekends?
The topics/subject areas above were intended to generate ideas/discussion areas which worked extremely well.
In this report I have not listed all the answers given but have given examples (below) of the main outcomes/points from these discussions
Internet Access
Ø Most patients said they would use the internet but that is should be a privilege rather than a right. It would require to be “policed” well as it may be used for detrimental purposes e.g. accessing pro-ana websites, checking calorific values of food etc. People said they would use it to keep in contact with friends via email and social networking sites.
Mobile Phone Access
Ø The majority indicated that they felt they would like access to mobile phones but safeguards would need to be in place. It was agreed that there should be strict regulations regarding the use of phones i.e. not during therapy work, mealtimes etc. It was generally felt that perhaps, again, access to mobiles should be a privilege rather than a right due to the fact that they could be abused in the same way that access to the internet could i.e. accessing the internet via the phone, raising body image issue by using the phone aspect available on mobile phones.
Although once again there were issues with mobile phones it came across that everyone would use their phone to keep in contact with relatives/friends.
Other Issues
Ø Wash-hand basins in single rooms – it was raised that these could be potentially problematic for patients with OCD type symptoms and that patients felt these should be removed from the single bedrooms.
Ø What patients take into hospital – it was felt that this should be policed so that any harmful objects/substances be confiscated.
Ø What visitors take into hospital – again it was felt that this should be policed so that any harmful objects/substances (which visitors may unwittingly take in) can be stopped before reaching the patient
Ø Random room searches – debate took place over this with the majority stating that they should occur
Ø Skin Checks – again this would be necessary for severely ill patients
Ø Visiting times – it was generally felt that open visiting at the weekends was a good idea so long as it did not interfere with mealtimes/snack times.
Ø Carers should be made to feel included
Ø Staff should be appropriately trained to work in an eating disorders unit
Ø Patients should be afforded some choices in their treatment
Ø Individual/tailored treatment plans were important
Ø Structure of the day/week was important
Ø Free time was important but in general it was felt that some activities should be available at weekend for patients who would not have visitors.
Mealtimes
Ø It was strongly felt that staff should eat with patients at mealtimes and eat the same food.
Ø The tables in the dining room should be round and not rectangular to create an inclusive atmosphere
Ø The quality of the food should be really good
Ø Portion sizes
Ø Everyone should eat together including tub fed patients
Ø Rules surrounding mealtimes should be clear, easily understood and adhered to by all
Information
Discussion took place surrounding information booklets for both patients and carers. It was agreed that this would be an extremely good idea and some ex-patients present agreed to become involved in developing these booklets. It was felt that testimonials/some motivational statements from recovered patient’s could be helpful to new admissions (although they may not realise this immediately).
nformation leaflets for patients/carers, available within the unit, was thought to be very important.
Patients suggestions for Activities/Facilities for the unit
Ø Film club
Ø Therapets
Ø Arts & Crafts .e.g card making, jewellery making
Ø Books
Ø DVD’s/CD’s
Ø Gentle Controlled exercise (for patients in active recovery) e.g. yoga
Ø Musical instruments
Ø Massage
Ø Jigsaws
Ø Board Games
Ø Computer games
Ø Bingo
Ø Television/Radio
On outings
Ø Clothes Shopping
Ø Visit to beach
Ø Cinema/Theatre
Ø Local Park
Ø Equine Therapy
Ø Supervised swimming
Items patients may wish to take into unit with them
Ø iPod
Ø Laptop
Ø DVD Player
Ø Games console e.g. Nintendo DS
Ø Books/writing equipment
Ø Personal Photographs
Ø Duvets
Ø Throws/Cushions
Ø Cuddly Toys
Ø Posters
General ambience of Unit
People were asked what they thought would make the unit a nicer place to be/visit:-